The Pew Internet/Health FAQ

A big part of my job, and one I love, is answering questions, mostly from reporters. Sometimes I have just the data or insight someone needs, often I recommend someone else.

Here is a sample of frequently-asked questions and my current answers. Please add your questions and answers in the comments: What are you curious about when it comes to technology’s impact on health care? What resources do you recommend?

Is a cultural shift affecting health care?

Yes. Thanks to the internet, people increasingly expect to have access to information. They increasingly expect to be able to comment on and easily share information. And it turns out that participation matters as much as access.

This is my favorite topic and I could talk for hours (or for 4:21; 4:44; 3:06; or 4:50).

How do people judge the quality of health information online?

The best they can, but probably not the way you think they should. However, we may have bigger fish to fry in health care.

UPDATE: I stand corrected on my citation of “Googling for a diagnosis” thanks to the comments below and those attached to the original BMJ article. Thank you!

But wait, who’s in charge of vetting health information online? Shouldn’t we be concerned about this?

Nobody’s “in charge” and to some degree, yes. The base of the internet population is broadening to include people with less education and lower health literacy/numeracy. E-patients with a high school degree or less are more likely than better-educated e-patients to say they were confused by the health information they found online. But note that the two groups are equally likely (and more likely) to say they felt confident to raise new questions or concerns with their doctor, too.

For more on the “who’s in charge” and “what advice can we give consumers” please see:

The Center for Studying Health System Change’s study measuring “patient activation” is one indicator. The central role of family caregivers is not addressed in the study, however. See the comments on this post, for example: 41% of Adults are “Activated Patients”

Deven McGraw, Director of the Health Privacy Project at CDT, is a good source on health privacy regulations and enforcement. Jules Polonetsky, Director of the Future of Privacy Forum, is a more general source.

E-patients.net has a few posts on the topic of health privacy and I am happy to provide contact information for sources on all sides of this question. (Nominations welcome in the comments!)

What business opportunities are there in this field? What does the future hold?

I do not endorse companies, people, or policies. I try not to make predictions about the future. But I can say that I am watching the spread of wireless internet use very closely. Wireless access has a significant, independent effect on how someone uses the internet and it’s the trend I am most excited about tracking over the next year or so.

I hear from start-ups and established businesses every day (yes, every day) who would like me to publicly recommend their work. I can’t. However, I’m happy to hear from them and would love to hear from even more — via email or here in the comments.

OK, I’m serious about this: I love answering questions and, even more than that, I love being useful. So help me out: What questions do you have? What answers would you like to provide? What resources did I miss?

Excellent answers – thanks for this! However, I think the conclusion “Google is a pretty good diagnostician” is not very well supported by methodology of that BMJ article, especially for searchers without diagnostic training. In the study, 3-5 search terms were chosen after reading the presentation of cases as published in NEJM — which would tend to be an concise exposition including all relevant diagnostic data and a minimum of irrelevant or extraneous details. The researchers state, “we chose combination [sic] of search terms we felt would be unique … depending on symptoms and signs that we felt would not return a non-specific result. We selected ‘statistically improbable phrases’ whenever possible…” The researchers also reviewed results on the first 3-5 pages of Google results (i.e. roughly 30-50 results). Even with all that, this process revealed the correct diagnosis in only 15 of 26 cases tested. Although I would agree that our goal and mission should be to empower patients to find, understand and critically evaluate quality health information for themselves online, I don’t think that BMJ study is very relevant to that cause because it reflects searching behaviors that are more typical of trained experts than of the average Google searcher, as described at http://www.pewinternet.org/Reports/2005/Search-Engine-Users.aspx and elsewhere.

Great post – I always pick up at least one good resource each time I read your entries.

Others have offered insight; I’ll offer some questions. In no particular order:

1. Interoperability of platforms – is this going to be an issue down the road? EMR compatibility is already an issue, as each vendor hopes to be the one that sets the standard, and there are many vendors (see here for one version of a list: http://www.emrexperts.com/emr-ebook/emr.php). In the interim, the platforms generally don’t talk to one another and patients switching from one system to another (say, if they switch providers) don’t have their records easily carried over. I have a telling pic that my wife took, of a 5.5″ stack of paper on her desk. The paper is a printout of a patient’s medical record from Logician, because her practice uses Epic. Unacceptable, and inefficient.

EMRs/EHRs are one thing – I’m also thinking about the growing world of consumer health informatics. If several tools are adopted by a single individual, with each tool focusing on a different aspect of health, will any of this information be able to join together to create a more complete picture of the individual? I imagine an end user would find that to be useful.

2. Insured v. uninsured individuals: do people with health insurance search for and utilize health information and social media tools differently than those without insurance? I am sure there is overlap, but I am not sure if uninsured people are more likely to use it as a substitute for seeking in person care.

3. In general, evaluation and outcomes research. There is a *huge* gap here. Anyone out there looking at the impact of these tools on people’s health outcomes? Or on health care quality? Anyone have any projects to throw at a doctoral student who is interested in this work? ;)

I look forward to hearing what others are thinking about on this topic!

The emphasis on health care is seemingly viewed from after the fact. If you drive down the road on bald tires eventually you will have a blow out and potentially a crash that could hurt someone. Using the same analogy, what would the cost be to teach people how to look over their own car to determine they need to replace them because of the danger?

This is why I posted this FAQ – to get some new questions and answers! I truly welcome the pushback, especially on the BMJ article which I admit I have recommended to many, many people. I will re-read it through this new lens. Have I mentioned that I love librarians? I wish there were more of them, everywhere, helping people.

Speaking of wishes, have you all been following the #blankcheck for health care discussion on Twitter? The Robert Wood Johnson Foundation’s Pioneer Fund is asking people what they would do for health care if money was no object. You can post your idea on Twitter and they are also posting videos on YouTube:

I’m seeing some #blankcheck ideas here: 1) A medical librarian on call, 24×7, to help people with online health research. 2) A magical platform that takes any legacy data/system/whatever and makes it work with whatever is the latest, greatest technology. A consumer never has to re-enter a single piece of their health history and it’s all available to them 24×7. 3) A #blankcheck for evaluation research to provide the evidence base for online health interventions. 4) A prevention specialist/health coach on every block to help people read food labels, design fitness programs, etc. etc.

I was happy enough about this post bringing up the role of quality health information but Susannah’s comment above about librarians certainly was the icing on the cake as far as I’m concerned ;) Glad to see Luke’s input about that BMJ article.

I am a medical librarian and teach other librarians classes about evaluating health resources for the public. One easy thing to remember is the ABCs: Accuracy, Authority, Bias, Currency & Coverage. See http://nnlm.gov/outreach/consumer/evalsite.html for details, it’s pretty similar to identifying quality sources for journalists to report stories. :)

I need to heartily second the comments of Luke Rosenberger re BMJ. Susannah, I would recommend reading the online comments that the BMJ posted about the article, because many, many people (including me) pointed out the goods and the bads of the article at the time. As Rosenberger states, this was essentially a search engine study using medical terminology queries.

Google was not even doing the “diagnosing”, despite the extremely misleading headlines that appeared at the time the study was released; the study was really testing Google’s efficacy as a clinical decision support system. Hence the subtitle of the article: “use of Google as a diagnostic aid”.

Human physicians (fortunately) were doing the diagnosing. If human physicians did as badly as a 58% accuracy rate, that would be cause for a whole lot more studies…

Regarding the question “What are doctor’s attitudes?”, from talking to them, many of them feel overwhelmed with the pressure to see more patients per day to counter the decline in reimbursement, while on the other hand having to handle questions from patients who bring with them printouts from internet health site including self diagnosis sites!